And just when I was all excited that I would have to fill in any more forms.

After just under a year of trying, failing, trying again and finally succeeding to get PIP, welcome to the sequel: ESA. Yup. My circumstances have changed, and now I have to make my own ESA claim. It’s like deja vu all over again. I’ve been sent a “Capability for work questionnaire” with the famous “Can you pick up a £1 coin” question, I have my sick note from the doctor and I’ll have not only a “Capability for work assessment” but also a “compliance interview” (because I’m going from being on someone else’s ESA claim to going onto one of my own and apparently I have to Do That The Right Way).

Are you ready for months of fun exciting blog entries about my third trip through the wilderness with the Department for Work and Pensions? I know I am!*

*At this point I’d like to personally thank the Department for Work and Pensions for giving me months, nay YEARS of material to blog about. I couldn’t have done it without you.

“…the government intends to introduce a legislative bill to place the NCS [National Citizen Service] “on a permanent statutory footing”.”

So. To be honest, I am not terribly surprised. Youth work has been moving slowly in this direction for a long time, putting “stuff” over practice, and numbers over longevity. Just as it is with the employment statistics, it’s not about the quality it’s about the figures. It doesn’t matter if your job is a zero hours job you don’t want, what matters is you got one and you can be added to the employment figures (up by a whole 2,000 people by the way, someone find the party streamers…). And so it is with the National Citizen Service, who boasts with having worked with over 200,000 young people in the few years it’s been running.

Cameron wants this for his legacy. But what about the legacy of the young people? In five years time, will someone who has been on an NCS course be able to say their life has been changed for the better because of it? If we talk to all these 200,000 young people in 2026, how many will be able to say their lives have been improved and made better through being involved? I’ll wager it won’t be many.

We all know this isn’t youth work. It’s prescriptive and it pays absolutely no attention to the needs of the young people it’s working with. For some young people it’ll be a fun summer and a step up on their way into uni. But what about all the other ones who fall off the end once their involvement with NCS finishes? Every professional who works with young people knows young people like this and knows that NCS just will not work for them. It’s short-term work when what’s needed is long-term investment.

And where does this leave youth work? It leaves it unfunded and unappreciated. Money is being thrown towards the NCS, it’ll get more and more difficult to find funding for good, long term youth work projects. There is already a lack of investment in good youth work, now there’s a big shiny government-backed logo standing in the way of youth workers being able to do any kind of good effective practice.

We’re pumping £1.2 billion into something that no-one knows the long-term outcomes for. But then, what does the long-term matter when you’re going to be leaving your post as PM in 2020 anyway.

So, my PIP appeal was not successful. The panel didn’t award me enough points under the descriptors for me to qualify. So no PIP for me. I can reapply, and I will, but the back-payment of PIP between last September and now – which I would’ve had if my appeal had been successful – is gone.

I was going to write about the tribunal experience, about going into a courtroom and being questioned and about how this isn’t an exercise in helping someone, this is a tribunal hearing where you are expected to explain yourself. About how you have to give evidence in the “right” way, and not annoy the judge which suggests that they may be basing their decision on their opinion of you, rather than on your medical evidence.It shouldn’t matter how much I piss the judge off if the medical evidence stacks up in my favour. But thousands of people have done this before and this is not something out of the ordinary. For many sick and disabled people, this is ordinary. Going to court to try and get the basic level of help to live your life is now “ordinary”. Unremarkable. Expected. Acceptable.

Personal Independence Payment is supposed to provide you with exactly what it says – independence. For the year I had PIP I used it for yoga classes, bus travel, car parking, heat pads and support pillows and a whole load of other stuff. Having this stuff meant I could look after bits of my health – travelling, sleeping well, moving around to a level I could manage – that meant I was able to do other things I wanted to achieve, like finishing my MA. Unfortunately, the things my PIP allowed me to do turned out to be the very things that led to it then being taken away from me again. The argument “when I have PIP I’m independent so I need to continue having it in order to maintain that” wasn’t enough. Which leads me to believe this isn’t about “independence” at all.

As for me, I’m alright. On the day of the tribunal I was upset but I went through the five stages of grief pretty quickly and had got to acceptance by the next day. I’ll reapply, I have other things to do, this isn’t the be-all and end-all of everything. However it does mean you’ll now have to put up with me going through the PIP process *again*…but you can blame the tribunal service for that one!

My PIP tribunal is in a week and I am exhausted. I am now also very aware of the cost that goes into a tribunal, both monetary and health-wise. I am one person, with one PIP claim, and it’s taking an army of people. And an army of people come with an army of costs.

I am immensely lucky to have a local law centre that is very good at PIP tribunals. Everything I receive from them, I receive for free. An initial consultation, time for my representative to read through my bundle of papers, a longer interview, more time for him to write up witness statements and finally their time spent at my tribunal representing me. Legal time is expensive time, and someone somewhere has to foot the bill.

And the tribunal itself. A judge, and two representatives have to spend their time conducting my tribunal. The court has to be booked and paid for. Travel costs, more printing costs, any other of a myriad of administration tasks that have to be done. The filing of court papers. The sending out of the letters instructing when the tribunal will be. This is all expensive stuff. Someone has to pay for it.

But the other huge cost of a PIP tribunal is that it makes people who are already sick get sicker. I’m so, so tired of doing this and I know how to do this. I know how this system works and I know how to fill in forms and how to say everything the way it needs to be said. I have help and representation. And I’m tired. I can say categorically that the PIP appeal process is designed to be as difficult and as exhausting as possible, in order to make people who already struggle just give up completely. It’s designed to be a big, impassable mountain.

So I’m not one to boast (honest!) but I like to think of myself as a reasonably intelligent person. I have a Masters degree. I’ve worked in housing and youth work and at various points I’ve worked in a professional capacity with benefits offices, social services and housing organisations. I’ve written benefits forms for almost every benefit there is at one point or another, and I feel pretty confident that I know how the benefits system works.

And I’d like you to bear the above in mind when I say, trying to organise my PIP appeal is not easy.

The top brown folder is the paperwork I already had. The pile underneath is the “bundle” the DWP sent to me.

My “bundle” arrived in the post a few days ago. This is the pile of paperwork the DWP send you when you say you’re going to a tribunal to challenge their decision. Because the tribunal is handled by the courts, the DWP has to give up any documentation they have for my PIP application so we can look over it and make my case for qualifying for PIP. Firstly let’s cast aside the fact that 99.9% of the 183 pages I was sent I already have. When they say you are sent a bundle that’s literally what you get. A wodge of A4 papers. Consisting of any application forms you’ve done, any supporting documentation you’ve sent, any assessments you’ve had, anything and everything they’ve used to assess your PIP claim.

And that’s it. You’re sent the info and that’s all you have. The rest is up to you.

Luckily, I already know that there are places that have a very high rate of success if you go to them for support with your tribunal. I know that if you have someone representing you at the tribunal you’re more likely to succeed. I know that I could use various local resources – Citizen’s Advice, the local Law Centre etc. – to help me put forward a good case at tribunal and so increase the likelihood of it being successful. I have the knowledge and the ability to be proactive and to go to the right places to get support in doing this. But even with all my background working in this area, I’m still finding it confusing.

I wonder how many claimants who should be receiving PIP stopped at the first refusal letter, because they didn’t know what mandatory reconsideration was and they didn’t have the support to apply for it. I wonder how many found the court form to request a tribunal far too confusing and just couldn’t do it. I wonder how many people on hearing the word “tribunal” were terrified at the thought of having to go to a court and argue their case. And I wonder how many people upon receiving 180-odd pages of meaningless paperwork just felt they couldn’t deal with the stress of it all. I can see why.

I almost feel lucky to be in the position I’m in because I know how to jump through the hoops. The system is set up to fail everyone who isn’t able to do that. This process is designed to confuse. It’s designed to be impenetrable to anyone who doesn’t already have a complex understanding of the benefits system. It’s designed to target those who are most vulnerable, who are struggling the hardest and who need the most help. It’s designed to make them give up.

Anyone who’s been semi-aware of anything that’s happened in the last 35 years or so will know that Tories don’t like Council Housing. They are the party of the “striver”, and so hate the idea that anyone’s getting anything they haven’t grafted for. The great oracle in the sky to aim for is the blessed state of Home Ownership. Thatcher in the 80’s made this available to your average bod on the street by letting them buy their council property at a fraction of their value, and from then on the holy grail has been to Own Your Own Home.

This week the government announced that lifetime tenancies for council properties would be stopped, and five year tenancies brought in. On first look, this is a difficult policy to manage. There are many people living in council properties who are earning a decent wage and could live in the private sector but who are taking advantage of the reduced rent of a local authority property. And there are plenty of people needing housing who could take up that now-vacated property. But in actual fact I don’t think the thinking behind this policy is as nuanced as that. I think it comes down to a hard and fast line the Tory party are pushing: you don’t want to live in a council property.

When council properties were starting to be built en-masse after the war, they were seen as replacement communities for the slums that had been either bombed or torn down. Everyone knew each other, neighbours were neighbourly and took care of one another. Tory policy has been the reason council estates have turned into places people don’t want to be (I’ll put some books at the end that I think are excellent reading on the specifics of this as I want to mainly focus on the stuff from this week). By creating what is in effect a five year rolling tenancy, Tories have made sure people will never feel totally settled in their homes. Why redecorate if you’re going to be told to move in a few years? Why get attached to a place if you might be told you have to leave it?

And the problem with not becoming attached to a place is that you lose a sense of community. After Right to Buy, there were a lot of council properties that were taken up by buy-to-let landlords once the original buyers sold up. Those in less salubrious areas often ended up being rented back to the council (who would have to pay an exorbitant rent to the private landlord) and used as temporary accommodation – those coming out of rehab, homeless people, people on probation. You end up with a transient population and where there’s a high turnover of tenancies there’s a low feeling of community (for a more in-depth look at this issue I highly recommend the chapter “Damage” from Nick Davies’ book Dark Heart – see end of post). A transient population is fractured. And the introduction of five year tenancies will make it even more so. This will cause a huge amount of damage to areas of social housing which more often than not are also areas of high deprivation and child poverty.

The Tories are pushing even further their housing hierarchy. At the top, home ownership. Underneath, expensive private renting. And at the lower level? Council housing, where only the poorest live. If you live in council housing, then, you must be poor. and we all know the messages the Tories like to push out about the feckless poor. Council housing is now a “last resort”. Which is going to further effect estates and communities. It’s another attack from the government to tell the poorest people “you do not matter”.

I called the DWP last week, a month after I’d sent the letter. They found it on their system, and the person I spoke to on the phone told me they’d basically forgotten about it. It had been scanned and entered, and then left.

Today I called again. The decision still hasn’t been made. This time I was told it could take up to nine weeks for a decision. Which is halfway through December. Just shy of three months after my PIP was stopped.

In this time, surprisingly, I have not magically become better. I have not adapted to life without PIP because, funnily enough, I kinda need it. My extra financial requirements have not disappeared. But now I don’t have the cash to meet them.

My PIP paid for my weekly gentle yoga classes that helped me move and got me out of the house. It paid for a bus, it paid for me to park the car. It paid for me to use the local Shopmobility services when I went out. As a result of me losing my PIP our ESA payments also went down. This means I now cannot afford the yoga class, or transport, or much of anything really for the moment. Losing my PIP – albeit only temporarily, I hope – has meant I’ve lost a lot of my independence. I cannot afford to get out the house. I cannot afford to go to places and meet people. This is how people become isolated – it takes sick and disabled people more energy than most to get out the house in the first place. If they’re constantly worrying about if they can afford to, that’s not going to help.

I’ll be alright – I know how to fight this and if it goes further and I have to appeal, well, I can do that. But it’s not fun, and it’s not easy, and I’m ill and I’m tired. How am I going to make myself “work ready” if I have to spend all my very limited energy fighting for the basic stuff I need to be able to live my life? Removing essential money from sick and disabled people doesn’t make them more likely to succeed, it won’t make them more motivated to go out and work. In fact, it is doing just the opposite. We’re all very tired of fighting.